| Joined: Mar 2013 Posts: 5 Member | OP Member Joined: Mar 2013 Posts: 5 | My mom had a tooth that was irritating her tongue for months in 2011 so she finally went and had it removed. The tongue still wasnt getting better so she went to her dr who sent her immediately to an ent and thats where this got serious. Biopsy showed cancer, scc the same cancer that took my gram in march of 2011 (it was also head and neck). My mom had a surgery in Jan 2012 removed big section of tongue and neck dissection but clear margins. Her tongue just want healing, the ent kept saying it was cause she was allergic to the stitches. Pet scan showed activity on her tongue and neck April 2012. Biopsy of neck and tongue were positive for cancer again. Ent sent her to another surgeon because she said this was beyond her qualifications. In May 2012 she had another surgery removed more than half of her tongue and total neck dissection. Treatment plan was 30 radiation txs and 6 carbo. Noone can prepare you for that it was horrible she had no peg tube but she managed to make it thru. Follow up Pet scan was good Nov 2012. Her tongue started to bother her again in Dec 2012. Drs think its just scar tissue from the treatment but its getting more difficult for her to talk and eat. Biopsy of tongue Jan 13 came back negative. Great news!! Ct scan in Feb 2013 tumor in neck and pet scan showed activity on back of tongue and tumor in neck. Surgeon sent her to a cancer center and the plan is to do Cyberknife and Erbitux. She is so scared of having the mask on again because lately she has been having some trouble breathing when she is laying down. She has lost about 100 lbs and is really weaked and frail. Im just so worried about how much she is gonna be able to handle. Is this treatment really horrible?
caregiver to 64 yr old mom, dx of scc on tongue 12/11 surg removed some of right side of tongue and right neck dissection clear margins 1/12 reoccur on tongue 4/12 surg hemigloss & total neck dissection 5/12 Tx 30 rad & 6 carbo, no peg finished 7/12 reoccur neck 2/13 tx plan Cyberknife & Erbitux | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 10,507 Likes: 7 | Welcome to OCF! Yes, treatments can be brutal! Im very sorry to read about everything your mother has gone thru.
the very best advice I can give you is to get her to one of the countrys top cancer centers. That will be her very best chance to get thru this. Her body is already not in the best shape after battling oral cancer twice so she isnt as strong as usual. Plus the major weight loss means to me that she could be malnourished which further complicates the situation. A feeding tube shouldnt be ruled out weather its a PEG tube or a nasal tube. It is a tool that can help her to stabalize her weight and get stronger.
Im also from PA. Wishing you both all the best!!!
ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive | | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,260 Likes: 3 | Hi there. The worse thing about Erbitux is the rash apparently - it can be uncomfortable. The cyber knife I'm not sure about but there are others here who've had it. Glad she's at a ccc. She should be In good hands... If she's made if through rads previously hopefully she'll be okay this time though she should have something this time out as she's lost so much weight. Try making her protein shakes to help put on some weight and best of luck. Hugs
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | | | Joined: Sep 2009 Posts: 618 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Sep 2009 Posts: 618 | I'll be starting the exact same treatment program in about a week at UPMC. If your mother is being treated there let me know in a PM and we can get together for coffe in Shadyside. I have been through this once before at UPMC so i can give her a few pointers. I can tell you that the cyberknif is not near as bad as the IMRT. She will only recieve 5 treatments over 10 days and the after effects were not as bad for me as the IMRT was. I got a mild case af acne from the Erbitux but I have heard of others who have had severe reactions. Charm is a frequent poster here and he had a very bad reaction to it, so yo have to watch it closely
Kelly Male 48, SCC (Soft Palet) Rt., Stage 1, T3n0m0, Dx, 8-09, Start IMRT 35 9-2-09 end 10-21-09 04-20-10 NED 8-11 recurrence, node rt. neck N2b 10-11 33 IMRT w/chemo wkly 3-12-12 PET - residual cancer 4-12 5 treatments with Cyberknife & Erbitux 6-19-12 Pet scan CLEAR 12-3-12 PET - CLEAR
| | | | Joined: Jul 2012 Posts: 3,267 Likes: 1 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 1 | I had a reaction to Erbitux, not the severe allergy or cardiac type, but after a few days I got the rash on the face, so minocycline, 50mg capsules, were prescribed. Then rash on the arms, back, legs, top of my head that itched like crazy, and my hair was falling out, still is 4 months post. Had severe neuropathy, but could have been the Taxotere, which was stopped, and needed a blood transfusion, and IV hydration. Infusion. Had to buy a seat for the shower, walker to save energy, and could not get up the bus stair, so used the lift. One of the meds caused mouth ulcers making eatng difficult, and then relied on the tube. The hospital had to rue out cancer so a CT scan was needed, and missed a few days of rads.The first dose of Erbitux is a loading dose around 450 depending on weight and subsequent ones are less, about 250, after a Benadryl drip, which always put me to sleep I hope this helps, and good luck.
10/09 T1N2bM0 Tonsil 11/09 Taxo Cisp 5-FU, 6 Months Hosp 01/11 35 IMRT 70Gy 7 Wks 06/11 30 HBO 08/11 RND PNI 06/12 SND PNI LVI 08/12 RND Pec Flap IORT 12 Gy 10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux 10/13 SND 10/13 TBO/Angiograph 10/13 RND Carotid Remove IORT 10Gy PNI 12/13 25 Protons 50Gy 6 Wks Carbo 11/14 All Teeth Extract 30 HBO 03/15 Sequestromy Buccal Flap ORN 09/16 Mandibulectomy Fib Flap Sternotomy 04/17 Regraft hypergranulation Donor Site 06/17 Heart Attack Stent 02/19 Finally Cancer Free Took 10 yrs
| | | | Joined: Mar 2013 Posts: 5 Member | OP Member Joined: Mar 2013 Posts: 5 | Thank you all so much, it is so nice to have someone to talk to about this besides my mom. I try to treat her the same way i always have and not dwell on her illness and be strong for her. She had her treatments st Arnold Palmer in greensburg after a consult at hillman. This treatment will be at the hillman at Shadyside not sure when they will begin. We wanted to have a peg tube in for the last treatment but her surgeon was so against them and there was a few weeks after the rad. was over that she didnt eat anything. That was when she really started to loose the weight. I am Hopeful that this treatment works and always try to look on the bright side. Thank you all!!!!
caregiver to 64 yr old mom, dx of scc on tongue 12/11 surg removed some of right side of tongue and right neck dissection clear margins 1/12 reoccur on tongue 4/12 surg hemigloss & total neck dissection 5/12 Tx 30 rad & 6 carbo, no peg finished 7/12 reoccur neck 2/13 tx plan Cyberknife & Erbitux | | | | Joined: Sep 2009 Posts: 618 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Sep 2009 Posts: 618 | I'll be recieving the same treatment at hillman also. I'll post my schedule to you in a PM when I get it. maybe we can get some coffee and compare notes during treatment. I recomend the PEG if you can get it.
Kelly Male 48, SCC (Soft Palet) Rt., Stage 1, T3n0m0, Dx, 8-09, Start IMRT 35 9-2-09 end 10-21-09 04-20-10 NED 8-11 recurrence, node rt. neck N2b 10-11 33 IMRT w/chemo wkly 3-12-12 PET - residual cancer 4-12 5 treatments with Cyberknife & Erbitux 6-19-12 Pet scan CLEAR 12-3-12 PET - CLEAR
| | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,260 Likes: 3 | Something easy to drink, a fresh smoothie with pumped up protein via protein powder will sooth her mouth and help pack on the lbs. you can add an ensure to it as well. Hugs
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | | | Joined: Mar 2013 Posts: 5 Member | OP Member Joined: Mar 2013 Posts: 5 | We are waiting for an insurance approval before they will schedule her for the treatment so Im not sure when it will begin. I love coffee and would love to have someone to talk to. Thanks again.
caregiver to 64 yr old mom, dx of scc on tongue 12/11 surg removed some of right side of tongue and right neck dissection clear margins 1/12 reoccur on tongue 4/12 surg hemigloss & total neck dissection 5/12 Tx 30 rad & 6 carbo, no peg finished 7/12 reoccur neck 2/13 tx plan Cyberknife & Erbitux | | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,260 Likes: 3 | Call the insurance company and tell them every day that passes her cancer grows, get their crap together and sign the darn approval. This wait could cost her her life.
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | |
Forums23 Topics18,168 Posts196,927 Members13,104 | Most Online458 Jan 16th, 2020 | | | |